Being a fat nerd living in poverty means that there is a lot of pop culture fashion that I just cannot afford. You may have heard that Torrid released a Sailor Moon-inspired line on January 9th. Sailor Moon has been one of my favorites for years. I knew I would never be able to afford whatever clothing came out though because Torrid is expensive.
CN: emesis, classism, fatphobia from doctors, medical negligence, disordered eating
So, earlier this fall, I had the honour and privilege to attend a showing of “The Phantom of the Opera” at the National Arts Center (NAC) in Ottawa. I was super excited about this. And I tried to keep in mind the positive aspects that came with that night. Taking the good with the bad, one would say.
The tickets were a little expensive… But it’s so rare that Phantom is in town, so totally worth it.
My original date cancelled and I was unable to find someone willing to buy the extra ticket… But my 11 year old niece was happy to attend. (Even if she didn’t repay me the ticket, oops)
I was black and blue as a result of an e-bike crash that week… But I was finally out of bed and able to walk again.
Overall, it promised to be an exciting adventure, and I was really looking forward to seeing my favourite musical live on stage.
Me niece looked absolutely adorable and precious. I had drinks and snacks. We were OUT ON THE TOWN!!!
CN: Mentions of death, suicidal ideation,
Think of someone you once knew.
A co-worker. A friend. A family member. Someone you loved. Someone you knew intimately.
Remember the details. The colour of their hair. The tilt of their head as they turned to smile at you. The sparkles of laughter in their eyes.
Close your eyes, and feel their arms around you. The arms of someone who cared. Who held you in your darkest hours. Who protected you, catching you even before you knew you were falling.
Remember how much you loved them. Try to remember the spark of hope you felt when you were with them. Feel within you how loved they made you feel.
And then bring yourself back to reality.
Return to the sad, grim, fact, that they are gone from your life. And no-one can tell you why. Because years ago, they vanished into thin air. Never to be seen again. And there are no answers to be found.
They are just… Gone. And no-one knows why, and no-one can say where. And no-one is looking. The trail has gone cold, and there are no clues left.
Again, bring your heart to remember the feeling that they brought to you. Focus on it. Own it. Hold on to that feeling.
This will be important. Because it is the only way that you will be able to see them long enough to find the answers. Continue reading “Guest Post: Disembodied”
(Note from Ania: This post by Sophie was written with the assistance of a speech to text tool. There may be some typos, which I haven’t been able to correct yet. I will come back and edit them as soon as I have the spoons to devote to it.)
We live in a world of experts. Scientists. Astronauts. Doctors. Computer programmers. Politicians. Teachers. Husbands. Wives. Parents. Men. Woman. All the people. Everyone you see around you is an expert in their field, even if we all haven’t gone through higher education to obtain a degree.
But you don’t need a degree to be considered an expert in your field. In a lot of cases, the people who will know most about a thing are the people living with and dealing with the thing. And for the most part, people accept these masters of the universe in their own chosen specialty.
Parents are masters in parenting.
Women are masters in being women.
Men are masters t understanding men.
Even children are masters at understanding children.
Social justice warriors are masters at navigating the system and assisting people in distress because of the system.
Marginalized people are masters at knowing what it means to be oppressed because of who you are, or what you believe in.
I am sure that you, reading this, are a master in your chosen domain.
But I cannot speak to what it’s like being a part of that domain. And it’s not why I’m here today, writing this. But I did want to make sure before I began that you understood that I SEE you. You are not invisible to me. And I am quite certain that you will have experienced some or many of these things that I want to speak about. I know that your pain is real. But I must focus my thoughts and speak of the things that I personally know, which unfortunately isn’t every single person on earth, much as I wish I could sometimes.
So let me try this again, from the beginning.
Each and every one of us is a master of our own domain. We don’t all have university degrees to tuck in under our belts, but we do all have our passions, and qualifications. Today’s words will focus on one particular subset of the human culture: Being disabled, and the invisibility that too often comes with it. Because while it isn’t the knowledge I would have wanted for myself, it’s what I have become educated on, by means of the circumstances I’ve been thrown in.
It is in that light, in that guise, that I introduce myself to you.
Partially human, Disabled.
You know, I don’t really care what scientists say about the matter. Whether it’s a hundred pounds, or trillions of tonss, I have found a more accurate way to measure the weight of the world.
CN: For medical details, descriptions of pain,
As early ago as two years back, I’d never heard the term “Social Justice Warrior.” The first I heard of it was from a friend. He made those “Pesky SJWs” out to be horrible things, worse than Klingons out for revenge. I didn’t really understand it, and so had no opinion on the matter. But given that I am a non christian liberal and he’s a conservative christian, I felt there might be more to it than meets the eye.
But, well… Too much life happening, and no spoons to research it. And besides, it doesn’t matter. I don’t need someone out there telling me what to do and how to do it. I’m an adult, right? Even when I don’t feel much like adulting.
CN: Ableism, Threats of Violence,
It’s been a hard week for me. Today was the first day I could walk semi- normally after crashing my e-bike into a car on Thursday.My legs are black and blue. I’ve got whiplash, sore muscles, and have spent the last several days in bed with icepacks at the ready.
I was happy to be feeling better today, because tonight I was going to see “Phantom of the Opera” at the NAC with my 11 year old niece.
Being barely able to move, with my legs looking like a cross between a gorilla and a black and blue elephant, and not to mention that fabric on my legs is extreme agony, I opted to wear some comfortable pants and running shoes. I wasn’t going to risk falling again by wearing heels, or risk having a miserable evening by wearing clothes that hurt my legs, or revealed their startling mosaic of bruised hairy nightmares to the whole NAC. Pants are definitely more respectful.
When we arrived at our seats, sitting directly ahead of me was someone I knew. The person who told me Phantom was in town and one of the reasons I bought tickets for this showing for this specific section. This way I’d have someone nearby that I knew, and my anxiety wouldn’t be as bad. When we get to our seats, I see that she’s there. So far, so good.
I said hello as I sat down. She looks at me with disgust in her eyes. “Really? You couldn’t dress up? This is the NAC, Sophie, you’re an embarrassment.” Well. I’m sure my hairy black and blue legs would have been more so, thank you very much. The safety zone I’d planned on wasn’t going to happen, clearly, but I had a backup plan. I took out my Anxiety Duck. He comes with me to my appointments all the time, and helps keep me calm. Again, my “friend” felt the need to comment: “Really? Put that away. You’re humiliating me.” OK fine. Guess who’s on ignore the rest of the evening.
I think one of the hardest things for me to learn after I became disabled, was when to slow down, and when to ask for help. We talk about the energy cost that comes with living with chronic illness, but accepting it is still a process. Coming to terms with the fact that you can’t do certain things is hard. You’re determined not to let being sick change you, but you have no choice. You have to. Because you are different now. There are things you cannot do, and moving on and becoming yourself means coming to terms with that.
What many people don’t understand is that it’s not a onetime thing.
It happens again every time we have to ask for help.
Society tells us, as well as everyone in our lives, that we are a burden and that that is all we can be. No matter how much we learn that it is not the case, it is still hard not to internalize that message. The message is passed along in the media around us – with disability being presented as the worst possible thing that can happen to anyone, and in the reactions of people around us.
When Alyssa and I were together for example, it was not uncommon for members of her family to question her as to what good our relationship was with me being so broken. When she had called her mother to announce our engagement, what should have been happy news was instead met with a sense of mounting horror and dramatic exclamations of “no, no, no”. Later when discussing it with her father, the concerns about tying your fortunes to a disabled person came up again. When I was with my ex before Alyssa, so many people would tell me over and over again that I was lucky to have found someone who was willing to stay with me. I think the worst however, was when a friend who also happened to be Alyssa’s partner tried to talk me out of getting a dog to train as a service dog for myself by bringing up how much Alyssa already had to do around the house.
Although it was never flat out said, the implication was obvious. I was a burden.